Advisory Board

Sofiya Cheyenne is a New York-based multi-disciplinary artivist, community organizer, and Teaching Artist. She believes deeply in amplifying the voices and stories of disabled peoples through art. Her work often spans from the education field to the entertainment industry. You might have seen her on Netflix's "Loudermilk" or in an Easterseals PSA recently. As a woman with dwarfism, Sofiya has always merged her advocacy and artistry together to challenge societal norms, combat ableism, and break barriers. Now as a mom of two, she has slowed down to focus on her children and family life, but mostly her physical and mental health. Having two very healthy pregnancies, Sofiya's recovery in the post-birth phases has been extremely challenging. Her experiences have pushed her to fight even more to expose all that exists within the medical field but also to share and create more space for women with dwarfism to belong. Sofiya is a firm believer in data and research and is thrilled to be part of the Advisory Board of Brandeis's National Center for Disability & Pregnancy Research at the Lurie Institute for Disability Policy..... The work continues!

Sam Crane is an Autistic mother and Legal Director of the DC Quality Trust for Individuals with Disabilities; her interest in the Center is both personal and professional. As an autistic, queer mother who also used ART, she has lived experience of being autistic and pregnant. Although her experience was positive overall, successful pregnancy required careful navigation of the healthcare system, strong self-advocacy, and a robust network of supports (including supports to help accommodate her communication and sensory needs during labor). She believes that the participation of advocates with strong policy knowledge and lived experience on advisory boards is critically important. She also serves on the Interagency Autism Coordinating Committee (IACC), which oversees autism research and services delivery systems, and served on the American Bar Association’s Commission on Disability Rights.

Joanne “JoJo” Forbes is a deaf mom of two beautiful KODAs. KODAs stands for Kids of Deaf Adults. KODAs often are raised in a bilingual environment, using ASL and English as their primary languages. Being a deaf mom in a primarily hearing community presents its own unique set of challenges with communication access and discrimination. During her pregnancy, she had to navigate a difficult bureaucratic system in order to ensure communication through an interpreter went smoothly during her birthing process. JoJo received her Master’s in Sign Language Teaching from Gallaudet University in 2013 and is currently a full-time ASL professor at Oakland Community College in Southeast Michigan. In addition, she provides ASL mentoring support to hearing families with deaf children. JoJo is happy to serve as an advisory board member to support this important work in addressing pregnancy and perinatal disparities in people with disabilities, particularly with the deaf and hard of hearing population.

Morénike Giwa Onaiwu, PhD, is a global human rights and disability justice scholar, consultant, advocate, author, educator, and parent in a neurodiverse, multicultural, twice-exceptional serodifferent biological and adoptive family. A prolific writer and social scientist/activist with both lived and learned expertise whose work focuses on participatory research, meaningful community involvement, intersectionality, and accessibility, Morénike, a recognized leader and content expert in various collaborative endeavors, serves as Founder/Principal Operator of Advocacy Without Borders, a nonprofit grassroots initiative, as well as a Research Fellow for the AJ Drexel Autism Institute at Drexel University.

Morénike, who is based in the US, maintains membership within several executive boards and is a highly sought after keynote lecturer and public speaker who has presented at the White House, the United Nations, and numerous peer-reviewed international conferences. Notable publications of Morénike's include over a dozen monograph chapter contributions, digital scholarship, peer-reviewed articles and editorial work. Morénike is a multiply disabled mother of six amazing children, all of whom have various disabilities.

Anna Holly is a black woman residing in Detroit, Michigan. At 14 months old, she sustained a C6 incomplete spinal-cord injury due to gun violence. She was struck by a stray bullet which left her with quadriplegia. Anna is the mother of two beautiful daughters and is married to her husband of almost 10 years. She has her associate’s degree in business administration/management and serves as an advocate and mentor for the disabled community.

In 2017 Anna joined the Christopher & Dana Reeve Foundation as a peer mentor. She would support mentees by giving them words of encouragement and setting up video calls to show them how she navigated parenting as a mom on wheels. When she started her parenting journey, she didn’t really have an outline or an example of a mom who looked like her. So, to be that for other women gave her a sense of purpose. Anna now works as an Information Specialist Coordinator for the Reeve Foundation. In this position, she provides information and referral services to individuals living with paralysis, their families, and caregivers. She is a pillar in the Detroit disability community where she speaks and mentors little girls who are navigating their new lives as wheelchair users.

Charity Hueckstedt, who has Osteogenesis imperfecta, has two children, one of whom also has osteogenesis imperfecta. Charity has served on the Transit Advisory Committee, SOAR School-Age Implementation and Action Teams, State Independent Living Council, State Rehabilitation Council, and the NICU Advisory Board. In the past, Charity has been an AmeriCorps member and volunteer trainer, as well as a project coordinator for an agency. She has conducted workshops on self-advocacy and self-determination and has conducted, assisted, and presented at various retreats and conferences. Charity has trained project trainers, developed quarterly newsletters, and conducted project overviews. Throughout her life, she has sat on many advisory boards and committees, including: Mayors Advisory Board, Project Heaven Advisory Board, Home of Your Own (HOYO) Committee, Path Advisory Board, Healthy Futures Advisory Board, Correlation Transportation Advisory Board, and Abused Women Advisory Committee. She has also served on the Metro Transit Advisory Committee, SOAR School-Age Implementation and Action Teams, and Neonatal Intensive Care Unit (NICU) Advisory Board.

In addition, Charity has conducted sensitivity trainings for private and public organizations and other service providers such as high schools and universities, the MIID Conference (now known as APSE Mental Health/ Mental Retardation Conference), local state chapters, the Arc Annual Conference, recreation conference, Disability Day at the Capitol, and Different Regional Facilities.

Norma Morán holds dual roles at Gallaudet University in Washington, DC. She is the Associate Ombuds in the Office of the Ombuds and the Interim Director of Nuestra Casa/Center for Latine Deaf Studies. In addition to her career, Norma is actively involved in her community. She serves as the chair of the Maryland Advisory Council for the Deaf and Hard of Hearing (MACDHH) under the Maryland Governor's Office of the Deaf and Hard of Hearing (ODHH).

Norma also sits on the advisory boards for the National Center for Disability and Pregnancy Research at the Lurie Institute for Disability Policy (Brandeis University) and the Deaf and Hard of Hearing Child Resilience Center at Gallaudet University. She also co-authored a toolkit for USAID titled "Universal Design for Learning to Help All Children Read: Promoting Literacy for Learners with Disabilities" (First Edition). She obtained her Bachelor's from Rochester Institute of Technology, Rochester, New York, and her Master's from American University, Washington DC.

Jessie Owen is a Seattle-based accessibility consultant, social-media content creator, and disability advocate. As a C5 quadriplegic and full-time power wheelchair user, Jessie brings a unique perspective to her work in Diversity, Equity, Inclusion, and Accessibility (DEIA). Her experience as a parent of biracial twins has added a new dimension to her understanding of disability, often inspiring her to innovate—or as she likes to say, "get creative with my wheels and navigate the squeals." Currently pursuing a public-leadership credential from Harvard, Jessie continues to expand her expertise and impact in the field.

Jessie serves on her local government's DEIA Commission, where she advises on policy and acts as a resource for the community. Additionally, she consults with Onward, an international medical-technology company developing innovative therapies for individuals with spinal-cord injuries.

Jessie shares her insights through her social-media platform, @ItsWheelyJess. Her content aims to educate and raise awareness about life with a disability, challenging misconceptions and promoting understanding with her characteristically candid and wheel-informed perspective. Through her digital presence, Jessie bridges information gaps for the disabled community, particularly for those navigating parenthood with a disability.

Heather Watkins is a disability advocate, author, blogger, mother, speaker, and consultant who was born with muscular dystrophy. A disabled Black woman living in Boston, Massachusetts, she graduated from Emerson College with a B.S. in Mass Communications. A cane-user and occasional wheelchair-user, Heather is the mother of a young adult daughter and was guardian for her nephew, who has an intellectual disability, through a Department of Children and Family Services kinship placement. Heather serves on a number of disability-related boards and is a former Chair of Boston Disability Commission Advisory Board. Heather is also a founding member of Harriet Tubman Collective, composed of Black Deaf and Black Disabled activists, artists, and organizers and a co-founder of Divas with Disabilities Project, a group aimed at showcasing the diversity and normalcy of women of color with the goal of impacting and transcending the definition of what disability looks like from group members' own perspectives. Heather writes/blogs as an extension of her advocacy; her blog is called Slow Walkers See More and includes reflections and insight from her life with disability. Heather's short story, "Thank God I have Muscular Dystrophy," was published in 2013 as part of compilation in the Thank God I...Am an Empowered Woman book series.

Robin Wilson-Beattie (she, her) is a speaker, writer, and advocate for disability and sexuality. She was one of the first people to talk about disability, sexuality, and marketing to adult product retailers and manufacturers. Robin combines years of personal experience with medically sound research to provide a unique perspective on how disability, life, and identity impact one's sexual and reproductive health and expression. She is the 2024 Carrie Buck Distinguished Fellow of the Lurie Institute for Disability Policy at Brandeis University. Her speaking engagements include multiple keynotes, panels, workshops, and webinars, including the Executive Office of the Vice President of the United States, and three consecutive years speaking at the Adult Video News convention in Las Vegas. As a disability peer researcher, she has co-authored a paper published in the Journal of the American Medical Association. Her work on sexuality has been published in various news outlets, blogs, and magazines in the United States, England, and Italy. Robin’s work has not only helped tens of thousands of disabled people but also inspired many others to become advocates for sexuality and disability education, an incredibly underserved area.

Robin is certified by the American Board of Sexology and the City College of San Francisco as a Sexual Health Educator. In addition, she is a member of the Association of American Sexual Educators, Counselors, and Therapists (AASECT), the Women of Color Sexual Health Network (WOCSHN), and a graduate and member of the San Francisco Sexuality Information Training (SFSI). She is a co-founder of the SPM Disability Justice Fund. When not discussing sex, she enjoys being a mom of two, renovating old houses, and heading off to the next adventure.